In August 2025, the Icelandic Minister of Health tasked the Director of Health with establishing a working group to address the organisation of healthcare services for individuals affected by ME, Post-COVID-19 Syndrome, and Postural Orthostatic
Tachycardia Syndrome (POTS). Environmentally acquired illness was later added to the group´s remit.Their final 206-page report was received formally by the Director of Health on 22nd September 2026 and the findings made public a month later. Responses and proposals from the Ministry of Health are awaited.
The Short English Version of the Report has now been released and it is clear that there is a high commonality with shortcomings in Iceland which are shared globally.
The key takeaways being –
- Patients with ME, Post COVID-19 syndrome, environmentally acquired illness, POTS,and related conditions experience a high disease burden when compared to patients with other serious illnesses. Despite this, the level of healthcare and support available to these patient groups is not in accordance with the severity of their illness and its impact on their lives.
- These conditions also impose substantial costs on patients, their families, and society, including through reduced capacity for education and employment and withdrawal from schools or the labour market.
- Healthcare and social services for these patient groups need to be extensively strengthened.
- The social security system must provide better support to these patient groups, including disability benefits, medical aids and coverage of medicine costs.
- Appropriate rehabilitation services need to be established, and it must be ensured that potentially harmful rehabilitation approaches are not employed.
- Clear safeguards are needed to prevent these conditions from being dismissed, classified, or treated as psychological or psychosocial disorders.
- Research on these diseases must be strengthened and funded. With strategic and targeted approach, Iceland has the potential to take a leading role in research and treatment of long-term consequences of infections and environmental exposures.
- Funding for this field must be increased to reflect the scale and severity of the problem.
The recommendations have not yet been adopted as government policy and would require actions across several of the state’s ministries and public institutions.
The main recommendations are broken down into several areas of responsibility with a selection being
Healthcare
- Awareness needs to be raised within the healthcare system about the nature and severity of these illnesses.
- Education for healthcare professionals needs to be significantly strengthened, to improve their understanding of how serious these illnesses are and the very real impact they have on patients.
- Diagnosis codes need to be standardised and utilised with consistency, so that prevalence and incidence can be recorded more accurately.
- It is proposed that ME should be defined as a serious chronic neurological disease, for which conventional rehabilitation is not indicated.
- It is proposed that the expert guidance on the diagnosis and management of POTS from the Heart Rhythm Society and the Canadian Cardiovascular Society, as well as guidelines from the Bateman Horne Center, be used as reference in the assessment and treatment of POTS in Iceland.
- It is proposed that electronic medical record systems within the public healthcare services be unified as soon as possible, and that privately practising specialists and treatment facilities that are publicly funded be required to use a common and coordinated medical record system with the public health care medical record system.
- It is proposed that home healthcare services for severely ill patients be improved, including home visits, mobile phlebotomy, and telehealth services.
- It should be ensured that patients who are at risk of experiencing post-exertional malaise (PEM) and have markedly reduced tolerance to exertion are not harmed by excessive physical, cognitive, or other demands when accessing healthcare. This applies equally to rehabilitation, disability assessment, inpatient care, and all other forms of healthcare.
- A biobank for these illnesses needs to be established in collaboration between Landspitali – University Hospital, the University of Iceland, and The Akureyri Clinic.
- International cooperation should be further strengthened, and it is proposed that the Minister of Health and the Minister of Nordic Cooperation use the Nordic Council as a forum with the aim to support Nordic collaboration in this field.
- A campaign should be organised to eradicate prejudice among healthcare professionals towards these illnesses, and to ensure that patients are treated appropriately and receive suitable support in every instance throughout the system.
- These illnesses have been under-researched relative to the number of patients affected and the substantial disease burden they impose. As a result, it is not always possible to rely on well-established evidence-based treatments to improve patients’ health and quality of life. Clinical experience and patients’ lived experience should therefore be considered alongside the best and latest available scientific evidence.
Social Affairs
- It is proposed that the patient group be offered the same social rights and benefits as other individuals living with serious chronic neurological diseases.
- It is proposed that the Ministry of Social Affairs fund one full-time social worker position at The Akureyri Clinic. The social worker would support patients and their families, provide advice to municipalities and other service providers, help coordinate social support services, and strengthen continuity between healthcare and social services for this patient group.
- It should be ensured that children and youths are not removed from their parents due to lack of belief in the existence of these diseases amongst professionals within the social systems.
- It should be ensured that children and youths with these illnesses receive strong support in pursuing their education despite the hindrances created by their illness. Account should be taken of the fact that the sensory environment in schools can make the attendance difficult for children with severely reduced exertion tolerance and that some school buildings may be affected by dampness and mould.
Higher Education Authorities
- Health sciences programmes at Icelandic universities should place greater emphasis on ensuring that students receive accurate and up-to-date education about these illnesses. The same applies to postgraduate training and continuing professional development for healthcare professionals.
- It is proposed that an academic position focused on teaching about and research upon these illnesses be established at the University of Iceland.
- Funding should be secured for patient registry, a biobank and research. With a targeted effort Iceland has the potential to become a leader in research on these diseases.
- “Research Centre on the Long-Term Consequences of Infections and Other Stressors” should be formally established in collaboration between the University of Iceland, Landspitali – University Hospital, and The Akureyri Clinic.
Social Insurance Administration and Iceland Health Insurance
- It is proposed that the Social Insurance Administration and the Iceland Health Insurance work together with patient organisations to prepare information materials on the rights and entitlements of individuals with these illnesses within the social and healthcare systems in Iceland.
- It is proposed that a working group be established, comprising representatives from the Icelandic Medicines Agency, Iceland Health Insurance, and healthcare professionals with expertise in treating patients with these conditions. The purpose of the working group would be to review reimbursement for pharmaceutical treatment, while recognising that, in under-researched illnesses, the same level and type of evidence may not always be available as for better-researched conditions.
- Moves to allow reimbursement of cost of medicines,and to ensure that patients have access to assistive devices and support solutions that can reduce exertion and help prevent worsening of their condition.
- The health, functioning and participation in society of patients with these illnesses can be significantly impaired by unsuitable, inaccessible or unwholesome housing. Patients should be supported to live in housing that supports their health and reduces their disability burden.
Financial Authorities
- Funding for this area needs to be increased in line with the scale and severity of the challenges involved
